Different Kind of Cord Question

Linda-n3

Outfield, I am SO happy to hear your news!!!! Be patient with yourself, do what the good doctor tells you to do so you heal up quickly. Will you need to do any physical therapy or special care? Best wishes coming your way!

kira66715

Outfield, sounds like all went well and continues to go well. Great!

Snaky little nemisis. 

Kira

Binney4

Outfield, thanks for updating us! I just love good news!! (Also brownies with extra chocolate chips, and thick, fudgy icing).

Be well!
Binney

PinkHeart

Outfield ~

Thanks so much for sharing and giving hope to other patients dealing with this rare refractory axillary webbing (earthworm thing).  So glad you had an easy time of it, and a great outcome.  Please keep us posted with your progress.

All ~

I'll be posting again as I get closer to my surgery.  Busy packing, and trying not to stress too much over this "Revision Plus" surgery.  I seriously think I'm having a harder time dealing with this 3 hour surgery than my first 9 hour "big" surgery.     

It was suggested that I also see a shoulder specialist/orthopedic doctor, which I did earlier this week.  He did not think I had any major issues with my shoulder - that my range of motion was due to restriction/tethering from my right breast IMF being sutured into my chest wall, as well as the severe axillary webbing/cording.  

This ortho surgeon had NEVER seen something like the cording growing out of my axilla.  I wish I had brought my printout of the Step Up Speak Out literature.  After showing him the webbing and giving him a demo of how I can't move my arm to certain levels and to different positions despite months of extensive PT treatment, I ended up aching for several hours! 

A week from now that horrid thing will be gone!  (and sure hope the BC that started this whole mess is gone for good, too!) 

PinkHeart

Hi Everyone,

 I haven't come back to post because I had hoped to have more positive news.

At first I thought only the cording/webbing part of my surgery on April 27 was unsuccessful, however, things got even worse 4 days ago.

During my surgery last month, my refractory axillary cording was excised along with "conservative" revision surgery on my radiated breast (done on a full/direct implant that was put in at time of immediate recon that's been a painful disaster from the get-go.)  At my follow up appointment 3 days post-op, the surgeon removed my one drain.  I told him that I was feeling pain down my arm to my wrist/thumb.  Said it was probably sore from surgery being on table.  He did not look at my axilla.

I already had PT appointments set up to start on Day 10 after surgery back home locally.  Back at home and about a week out from surgery, the pain in my arm got worse and my arm started to bend/pull at the elbow.  I had a bad feeling and when I walked in to my first PT appointment with the same PT that worked on me for many months, she confirmed that I had new onset of axillary webbing/cording and it was much worse.  We counted the webs that went down to my thumb as you could see them and this time I took pictures.  The huge cord that was supposedly excised is smaller, but still there.  And, now there is a whole new "mother" cord that runs parallel to the original "grandmother" cord. 

She has been able to manipulate the individual cords that ran down my arm and my arm extends straight and the pain does not run through wrist anymore.  She was just starting to work on the mother cord in my axilla, which BTW, when pushed on I could feel pulling under implant just as in the past with the other big cord. 

It was too soon for her to start on scar release therapy.  The surgeon said he removed A LOT of scarring from the radiated breast (that was a mess even before radiation so that radiation cooked into stone such as the screwed up allerderm sling).  I was not getting relief from pain, however, my breasts did look a little better.  He had made new incisions in the IMF of both breasts to do revision work.

Last week was 5 weeks post-op and I thought things would get better with more PT sessions and my home PT.  Then at my appointment with PT last week, I was on table with compression cami pulled down and she was gently working on cord in my right arm.  She happened to glance over at my right radiated breast, and said "OMG, you are bleeding in your IMF scar."    

She also does wound care and she cleaned it up and saw that the incision had split open and my implant was protruding.  She got out a mirror so I could see under breast, and it was creepy/ugly and not what anyone of us want to see.  I started immediately calling my surgeon who did not call back on his personal cell number he gave, nor did the call to his staff get sent on to him or another doctor there.  My PT was really concerned about infection and sent me to ER.  My surgeon did not call back the ER doc who left message, too.

The ER doc thought he might just stitch me up, thought better of it (Thank GOD), and called a plastic surgeon.  The ER ended up irrigating and bandaging me together and put me on antibiotics.  I was determined to go to my son's high school graduation ceremony, then the next day I had surgery and the implant had to be removed.  My dear sister and a good friend spent the entire day getting together the house and food ready for the graduation open house I had planned for my son which was the next day after the surgery .  My kids and husband kicked butt, too, to make sure the party could still happen because I refued to cancel it.  It turned out really nice and my son was really happy which is what I most wanted.

My surgeon did finally call me the night before surgery with a bunch of blah, blah, blah and said to have the local surgeon call him first before doing surgery.  Local surgeon didn't bother to call him, said it wasn't necessary at this point. 

My surgeon who did revision & cording surgery said it probably split because I did too much, which I said I did not and even had to have him be more specific in discharge instructions and write a note for me not to lift more than 5 lbs with right arm and had to ask him how high I should lift arm after surgery, etc.  He questioned what the PT had been doing to me like she had caused the split.....

Then he moved on to another theory that it split because I was on aspirin during surgery (had to because of heart) and that I probably had a hematoma going on the whole time and this caused the skin to not heal and split.

The local surgeon just came right out and said, "dear, your breast was a radiated mess and could not support an implant, and you just needed to go straight to getting new SKIN." 

The local surgeon I found last minute does not do the tissue flaps or free flaps surgery, but what was GREAT news to hear is that they refer their patients to the "NOLA" plastic surgeons, whom I already had started consultations with about 4 weeks ago when I had the bad feeling that things weren't right and they were who I should have gone to first.  So, soon I will be posting to the NOLA thread, or actually the Charleston thread for Dr. M.   

So I still have implant in left breast, and now my right breast is ugly and shriveled up and looks like skin tacked down in my chest.  I should be getting this latest JP drain out tomorrow.  Even though I still feel weak, I am returning to work tomorrow.  I did cancel a job interview I had scheduled in the afternoon.  I hate interviews as it is -- let alone with a surgery drain sewn in my side, sans a boob, trying to figure out my wardrobe, and chock full of oxy and xanax!

So after 4 surgeries in one year thanks to breast cancer hell, I'm thankful my physical heart has weathered this well considering my heart history -- it's just my mental heart that is aching.

Peace & Blessings to all of us. 

kira66715

Oh Pinkheart, what an ordeal! I'm so glad you got good local care and were able to be with your son during his graduation.

The plastic surgeon who didn't return the calls sounds like a real piece of work: it's never, ever going to be his responsiblity.

This will get better, and please take care of yourself, emotionally and physically, and let us know how you're doing and if we can help.

Extremely gentle hugs.

Kira

Binney4

Oh, Pinkheart, what an ordeal! Reading that was heart-wrenching. Hooray for the successful open house--that means so much and you must be so pleased with that part of it all. THAT is the part that will remain even after everything is healed and you've gotten your life back again. Congratulations to the graduate, but most of all to you for bobbing to the surface despite so much upheaval! You're an inspiration.

Now, is there any way we can help? We're here to cheer you on as you pursue real healing, in every way.

Be WELL!
Binney

BeckySharp

Pinkheart--So much you have been through!  I am amazed at your upbeat attitude.  Glad your open house went well and son is graduated.  I hope things go more smoothly for you in the future.  Becky

PinkHeart

Thanks all for your kind thoughts. 

I just got my drain pulled this afternoon by my PCP, so am feeling a little better.  I have follow up with local PS on Thursday.  On Friday, I will see my PT and ask her to at least massage my arm and shoulder because have intense ache in them.

I wonder if without an implant/breast, I will still feel like I have mild chest wall lymphedema as Dx before.

Outfield

Pinkheart, I am so sorry this has been so awful for you.

I'm continuing to do well after my own procedure.  Last visit with PS tomorrow.  It was such a tiny surgery compared to what you had done.  

I hope your massage helps.   

PinkHeart

Outfield, how did your last visit go with PS?  I wish I could somehow send you pics and if you could tell me if your cording looked similar.

I'm really happy for your outcome and thanks for sharing.  This means you can really enjoy your summer more, too! 

I have a two-hour phone consultation with Dr. Massey (NOLA doc) tomorrow morning! 

kira66715

Bump for Rocket

PinkHeart

Hi,

I have a question regarding the Step Up, Speak Out lymphedema web site.   (SUSO)

I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery.  I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.)  Everyone was clueless and never mentioned AWS -- except the PT-CLT.  Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE --  let alone its bitchy friend AWS-Axillary Web Syndrome.

I haven't reviewed the SUSO site for about a year, and just went there again today.  I noticed in the Highlights column on the left that the following statement is now in bold letters:  "... have concluded that axillary web syndrome is a risk factor for lymphedema."  Further down, #3 states "Cording is associated with the risk or development of lymphedema."  (maybe it's always been there but I missed.)

Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE? 

Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE? 

Perhaps Dr. Corrine Becker or her surgeons that have trained with her? 

Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?

I'm going to copy this and post on a few other threads.  Thanks everyone, I appreciate your feedback and experiences!

Here is link to SUSO, to the AWS page: 

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

kira66715

bump

PinkHeart

Thanks for bumping Kira.



Next week I am having yet another breast reconstruction surgery, and my microsurgeon plastic surgeon is also going to detach my cording from where it originates kind of in my chest wall.

Outfield

15 months out from my surgery, I am doing well.  Removal of the monstrous cord (1cm diameter and full of surgical clips on the report) revealed a couple more beneath and lateral to it that gets sore sometimes.  I've toyed with the idea of getting them removed as well, since the monster was such a minor surgery, but I'm not sure.  They don't make me crazy the way the big one did, they just hurt after exercise like swimming.  

The big one has not come back.  At first, my skin still had the shape as if it were under it, but it's gradually flattened out.  All in all, still very, very glad I did it.

I don't understand why my body in particular did this.  I healed well in all other ways, don't make big scars, and I had a good surgeon.  Looking back, the key to getting it taken care of was getting out of the offices of the breast cancer production line mentality plastic surgeons.  My burns guy was great. 

kira66715

What great updates!



Outfield, love the reference to the assembly line mentality, so on target

gmn_canada

 Cording or AWS was never mentioned to me pre or post surgery....I experienced it (34 lymph nodes removed during axillary dissection) and I didn't know what it was until I googled the symptoms.  It was very painful and no amount of stretching resolved it.  I had a second surgery (re-excision) 6 weeks after the first and amazingly the cording was simply gone post surgery.  I read that it can self-correct (mine did) or that physiotherapy (from someone who knows what they are doing regarding this issue) can help.  If it is not self-resolving then find a physiotherapist who can help you.  Do not suffer in silence!

Best to you.

Linda-n3

I don't know if I posted this before, but I had AWS within a couple of weeks post-op that was missed by the NP, but PT diagnosed it and gave me great relief with therapy. However, I was told at the time that this was NOT a risk factor for LE, but now I read all over the place that it IS INDEED a risk factor for LE. I found this out the hard way, now have been treating LE for over 2 months. Just a reminder to USE YOUR SLEEVES to prevent LE! My best to all of you!



And I second the comment by Outfield to get out of the assembly line mentality!

16Christine

Thanks for this thread. Post-mx cording and scarring have been my worst problems. Good PT released the arm cords. It was rather dramatic -- PT worked on it for three months, then one day after the warmup (arm-cycling for 5 min on low resistance) I did a stretch for a few seconds, then suddenly there was no resistance. I held the stretch for a few minutes and skipped the other exercises that day. It felt great.

That was one year ago and one year after surgery.

I still have something pulling between the incision and the armpit but some of that is probably due to radiation and I don't really want to open up the "cancer side" again for a minimal benefit. Nearly full ROM is back, though I have little arm strength at full extension. My reach exeeds my grasp!

Because PT helped, I'm taking a chance and having a simple prophylactic mx on the other side this month. I have a clear MRI so there will be no SNB, no lymph node touching allowed. I have found it very difficult to live with one large breast. I feel off balance and it can't good for trunk muscles. I consider myself too old for reconstruction and my best chance for a somewhat normal life is to go flat at home and have a couple of foobs for going out.

Thanks for this wonderful site, and for this thread, which describes perfectly my experience/concerns so far. I don't post a lot, but I read a little nearly every day. Best of luck to all of you trying to find QOL after treatment. It is elusive.